About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Thursday, April 06, 2006

Planters of the Doubt Seeds

Anonymous is back on my site, selling ABA (see comments section of yesterday's post). Anonymous, this one anyway, has no guts. Anonymous wants to promote intensive ABA therapy at ANY mention that a child with autism has had a bad day. It must be because that that child isn't doing ABA. Anonymous called me ignorant by dismissing ABA. I call anon ignorant in assuming that from one post Adam needs intensive ABA, assuming that we've never tried it. I also think it is ignorant not to acknowledge that there are many modalities of teaching that work for children with autism.

Hey, if it works for your child, do it, I say. I strongly disagree, however, that a child who is an apple must be turned into an orange. This is most often the premise under which ABA is used, unfortunately. In short, that attitude and attempt to alter a person, is a human rights violation.

I must also say that Adam is doing, despite some of our harder days, amazingly well. I do not need to compare him to other children to see how he is doing.I can look at Adam's world and see it without this kind of context. If I had to compare, which is the way people with autism are evaluated all to often, he goes to an integrated school, he sits in circles, sings songs, participates in groups, plays "functionally" -- he is beginning to do so many things and I run the risk of belittling him if I ream off a list of what you want to hear. If I had to look or compare with other children of the same age, I witness the same wandering behaviours. At the age of four, I see many other kids tantrumming. It is utterly ridculous to assume that autism is always to blame. It is naive to put autism under this kind of microscope. Some things will take a little longer for Adam, maybe, likely -- it doesn't matter. I find it utterly horrible for people to come on sites, and comment that one's child would be "doing better if..." You don't know us. You don't see my son. You, anonymous, are ignorant.

Parents who have not visited at least a hundred children with autism, as I've done over the course of two and a half years, who have tried "intensive" ABA therapy which didn't work for Adam, who spends hours researching options, combing through both rubbish and viable teaching ideas, might be subject to doubt with people like these. Afterall, isn't it compelling to believe when one says you haven't done something that it must be your fault?

This is the problem. People who are "selling," particularly the ones who stay anonymous, seep into parental doubts. I know because I was there. I know because the call of diets, DAN!, mercury poisoning claims (don't you know that the "feeble minded" of the 1800's were also claimed to be contaminated by mercury?!! I mean, must be something to cause the difference, right? Argh.).

C'mon anonymous. Have some guts. Come out of hiding.

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Postscript:

On a lovelier note...in the middle of writing today, my friend -- the one I wrote about in earlier posts -- came by. It was emotional. It was EVERYTHING. You see, if you can be honest, things can happen. Beautiful things. I do have a friend who really cares. Without getting things out in the open, I may have never otherwise known. Life is too short and we need to KNOW who stands with us. Without friends, ones I can really talk with, this is too difficult. I think it took a lot of courage for my friend to do what she did and I really do have renewed faith in people.

15 Comments:

just a mom said...

All kids have good days and not so good days. Parents too. It is so typical of ALL kids to gain a new skill and then appear to lose it or regress causing us to wonder what is going on. Often not much more than the fact that they may just be focusing on something else that has caught their attention for a time.Also, it so normal for ALL kids to go through stages in which skills are aquired and then they experience a time of leveling off for awhile when the skills are consolidated. It doesn't mean they won't progress. They need time to digest what they have learned.Glad you notice that lots of other kids wandered off. Now that is what I call typical. It took me a few kids to realize that though. The attention span of all 4 year old varies but can be very very short.You drew the parallel between your son and his sister at the same age so you already know in your gut that a lot of what you see is what you will see in plenty of other homes. They call it the "terrible twos" but they don't tell you when it ends :) As for computers, they are excellent tools not just for learning but for expressing.No, its true you probably won't learn social skills glued to a screen but they have a place and are a great tool.When my guy could not speak in a way that was undertandable to others he learned to read via the computer and that opened up a whole new world to him.Go with what you know feels right to you as you have been.How could every person on the ASD spectrum be lumped together when every person not on the ASD spectrum is considered an individual? Sorry for being a few posts behind in my comment which, I just realized.I must need therapy.

Clearly you missed the point which I further explained on the other post. It seems that you are exhausting yourself trying to convince everyone of acceptance (which would be lovely), but short of that happening, all children on the spectrum deserve to be educated to their fullest potential. Again, a good ABA program will incorporate different methodologies in order to accomplish that.

There are two things I've learned so far: 1) I need to take my cues from Bud, and 2) I need to follow my instincts.

We don't use ABA, because when I have run it through filters 1) and 2) it doesn't seem like the best fit for us. ABA *does* seem to be very effective in helping kids progress towards particular goals. They don't happen to be our goals right now. My vacuum cleaner does a great job on the carpet, but it doesn't do as well on the bathtub. Even a great resource is useless in the wrong context.

Anonymous - clearly you continue to miss the point. ABA might work well for you (or more importantly your child) but it doesn't for every child. When it comes to autism there is no 'one size fits all' scenario. Your argument is repeated again and again for every form of therapy has its fanatics. ABA, Chelation, Clay baths, AIT, GFCF diets.

You are also operating under a misconception about what the word 'acceptance' entails. It does not mean 'do nothing to educate your child'. It means 'accept that your child processes the world differently from you and needs a carefully tailored education to suit their needs'. For you, thats ABA. For some of us, its not ABA.

Anonymous, what is the evidence you use to indicate that ABA is an effective treatment for all autistic children? And do you happen to have data so parents can have an idea of what effect ABA might have on a 4 year old child, say, when they are 20?

Anon--if I may--I highly doubt that Estee has missed the point.If I read her right, she is fighting for acceptance, knowing full well it is an uphill battle but that it is the problem of our society and not the people who do not fit into prefab boxes. Estee also seems to be working her buns off to make sure her son gets the best education possible and it is up to her to decide what that is.Estee can speak more than well enough for herself, but I will speak for myself when I say that your tone is so agressive and disrespectful of everything that her blog is trying to achieve. From what I can tell this blog isn't about ordering anyone what to do. It is an exploration of ideas and there is an openness to other ideas. As far as ABA goes, so many therapies have come and gone over the years and that applies not just to autism. What is in today is out the next. Parents should be free to incorporate aspects of whatever works for their child without being blasted by anyone for it.I don't think I saw anyone blasted here for using ABA just that it is not the be all and end all and that there are other things to explore.We should also pause to remember that some people with autism who are no longer children and did not grow up in the days of ABA are still somehow managing to express themselves beautifully and are today leading meaningful lives.The point really is that all lives are meaningful

On skill mastery: The great horse trainer, John Lyons, teaches explicitly that the road to mastery involves regression. In other words, expect your horse to appear to have a skill mastered, and then to behave as if the skill had never even been presented. If you expect the regression, you don't experience either despair or frustration--you just see it as an expected part of the road.

Let me be clear: I'm not comparing autistic persons to horses here.

I think regression is a part of learning for all people. I have certainly seen in my own road to learning new skills the same pattern.

Don't worry about whether or not I'm exhausted. I can assure you that I'm doin' just fine.

Acceptance also means accepting that the world is difficult. Not everyone will accept people in wheelchairs, people who are black, Jewish people, either. Despite this, it is vitally important that we keep advocating for our rights as human beings.

Advocacy will be life long. I'm in for the "marathon," not the quick fix.

Also, how many hours of ABA do you recommend? How "intensive" could it be (remember, you recommended it to me), if you are incorporating other strategies?

I think it's great that you at least acknowledge that there is more than one way to teach, so your recommendation on intensive ABA is a little confusing.

Thanks for the recommendation. I don't agree this is the best strategy for Adam and I would respectfully advise that you watch how you sell ABA to others.

As for all the other commenters today, it's good to know that there is a huge contigent of folks who "get it."

Estee, You'll have to place in the group that doesn't 'get it'. I don't get why it's so important to anon to lump a bunch of approaches together and insist that they are a called ABA. I don't get why lumping that particular group of approaches is called ABA and your particular 'watered down' group of approaches is called 'Not ABA'. (end of sarcasm)

Don't let the 'anons' drag you down. Your energy is doing too much good elsewhere.

Estee, Your lovlier note was lovely...and beautiful. Coincidentally, before reading this I posted on my introspections of my teaching and ABA...but then again, I question "coincidences".

Speaking of "anonymous" comments, that reminds me of the studies in psychology of masks and how people behave differently and less conscientiously when behind one (an example being the Ku Klux Klan). People do things behind masks that they wouldn't do or say exposed. I am so reserved that my seemingly reserved posts are much more open thn I am...I have always intended to remove my mask when comfortable however...

"I think of "awareness" as being a synonym for "education." It is up to us to educate others on the neature of autism so that there is more tolerance for autistic citizens. And it is important to educate those who live outside Autismland that we have our own disagreements over the causes and appropriate responses of ASD."

I picked your comment up from an AutismLand post. I'm new to the Blogger side of Autism posting, spending most of my time at LiveJournal and have to say that I've read a lot of negative here(Blogger.) You are indeed a breath of fresh air and I absolutely agree with your comment.

Thanks, anonymous. (I'm sorry...I can't tell one anonymous commenter from the other so I don't know if your the same anonymous...).

Belief is a difficult thing to talk about. But through a lot of research, searching I know that supporting parents, advocating for acceptance and supports for our kids, and respecting the abilities and the dignity of all humans is the most important thing we can be working for.

I also believe that to view humans as a subset of deficits does not build a solid teaching methodology. I am terrible at math...do you want to keep trying to make me into a mathematician?

Human life is about what we can do, about differences, about spirit.

We must all ask ourselves, are we doing are utmost to protect and honour all of that?

I LOVE this: At the age of four, I see many other kids tantrumming. It is utterly ridculous to assume that autism is always to blame. It is naive to put autism under this kind of microscope. Some things will take a little longer for Adam, maybe, likely -- it doesn't matter.

This is what I keep trying to explain to others, especially immediate family. I don't need to "fix" my son, Conor, and he IS still just 3 and 1/2. They tantrum! I keep trying to explain that I just need to help him obtain some tools. And sometimes, I don't need to help him at all because they're just taking a bit longer to get here.